I remember so vividly when Ocean was growing inside me. Still to this day every time he gets hiccups I can feel the movement in my belly when he had them in utero. He seem to get them almost every day. I remember the first time I felt it I thought he was rhythmically kicking. Scott and I couldn't really figure it out and it was of course my mother who felt my belly and said that he had the hiccups. It made him so real. It's almost like for some reason the hiccups gave him a personality. Every time he got themwe would laugh. He brought us laughter from the very beginning. His spirit is full of joy. There's no better word to describe him. He wants to laugh. He wants to play and tease and be tickled. I'm so thankful that diabetes has not taken that from him. And I'm so thankful that he continues to bring us joy. Lots of moments are hard. Lots of moments are happy. That's just real life. Diabetes or not. I want to choose to focus as much as I can on the joyful times. And to be patient during the hard times.
It's been a crazy 2 weeks. Crazy isn't even the right word. I keep telling myself to write a blog about it and I don't know how. I have such conflicting emotions. All I know is that I keep crying about dumb things. And we all know that when you cry about the dumb things you're crying about something else. I haven't let myself cry much since Ocean's diagnosis. I cried once in the hospital when our diabetes educator, and now friend, finally convinced me that he had diabetes. I think I said this before but I didn't believe them for like the first five days that we were in the hospital. And then when we got home there was no time for tears. It's been a year - I've been devastated, I've had panic attacks, I've been furious but I can count on one hand how many times I cried. I cried when I had the infamous attack on a roll of insulation (blog post "current stage of grief: fuckin pissed) but it was an angry cry. I cried as I held my son at home after his dental surgery as he cried and screamed in pain, in confusion, in hunger and I'm sure in anger. I cried hard that night. I remember holding him and just sobbing because I couldn't fix it. I couldn't fix any of it. I couldn't protect him from diabetes. I couldn't protect him from them yanking out six of his teeth when I thought they were going to try to save the teeth. I couldn't protect him from waking up alone in the after surgery room scared and confused. I remember laying down next to him on the bed and whispering in his ear "mommy's here." PS. Why the hell do they wait until your kid is awake to come get you? I thought I would be there when he woke up so he wouldn't be scared. I can't imagine how frightened he was. It makes me anxious just thinking back on it. The second he heard my voice he calmed down. Blood was running from his mouth, his cheeks were swollen to double their size. All that blood. All that PTSD soaring back from just six months before. We were in the same hospital, on the same floor, in the same waiting room.
I give Ocean 5 to 7 insulin shots a day. Most of the time he doesn't react much. He prefers them in his arms but his arms are getting beat up so I've had to start doing them in his thighs. He doesn't like it but once it's over he just moves on. Except for this morning. I went to give him a shot and he squirmed away for me. I held him down and gave it to him. Afterwards he looked at me different. He looked at me like I hurt him on purpose. He tried to bite me in response. Like you hurt me, So I'm going to hurt you. I cried. It always felt like he didn't connect me to the shot. But today his eyes held betrayal. All I could do was pull him close and cradle him in my arms. My arms that are supposed to protect him. My hands that are supposed to keep him from harm. Those same hands that hurt him every day.
That's a little like how I feel with all of this attention we are getting. I want to curl up with him and hide. Most of it is positive. Only some trolls and that's to be expected. But even with the positive response I feel like I want to hide even more. I'm sitting here trying to figure out why. And I guess it's because our story is so real to us every day. Our memories and PTSD from the hospital are still very real. I like to keep them in a little box in the back of my mind tightly closed. I tell myself I will deal with it at some point but I can feel it bursting at the seams, saying deal with me. Look at me. When I focus all my energy on the day to day requirements of keeping Ocean alive I can mostly ignore those memories. But I think that's what's happening. All of this talk. All of this attention. It's making my mind to say -deal with me. Look at me.
No. I don't want to. But the tears seem to be spilling from the box. Weakening it. Willing it to open.
How wonderful that we have met with a paradox. Now we have some hope of making progress. -Niels Bohr
What a week. Interviews. News. Internet. CNN. Excitement. Exposure. Trolls. And to top it all of Shake it off dance parties with all three of us.
Here is the link to the Channel 12 segment on Ocean. If you have read much of our blog you will see that it is a bit more than chopped but that's the news. Hopefully it will bring some more awareness to type one or at least lead people here for some further insight. Channel 8 airs tomorrow.
and the CNN story
Here is the channel 8 story. It's my favorite one.
Nowthis News and a French website Positivr
On Monday we had channel 12's Haley Rush come for a quick interview. It was kind of a whirlwind, she called at 3:30 and asked if she could come right then and so we scrambled around in a wash my hair because it was pretty gross and had a fun interview with her. Ocean wasn't really up to painting much that day but Haley obviously made this segment work because CNN picked it up and it's going crazy on mine. So thank you Haley!
And then on Tuesday we got to meet to the fabulous Tracy Barry (I hate to admit that I didn't know who she was, I stay away from the news because it hurts my heart.) They took the time to play with Ocean and were here for almost 2 hours. Talking with me, taking pictures, watching Ocean paint, chatting with Scott and just enjoying their time with us. I could feel that they cared about our story. It wasn't just about filling a news slot. Hopefully the segment will show next week. Here are some fabulous pictures of Ocean having a blast.
Since diabetes came into our lives I liked all care of myself go. I didn't sleep. I didn't eat. I didn't laugh. I've barely even brushed my teeth. about seven months after his diagnosis I finally fell apart. My body said no more. My body said please take care of me. The thing that is helped me the most (besides brushing my teeth a little bit more so my husband will still like kissing Ha!) is daily yoga. I've had yoga in my life since I was 14. I've had periods of my life that I didn't do it regularly but once I start teaching in about maybe 2010 I started doing yoga for times a week. I only did yoga when I was teaching or when my anxiety got so bad that I had to do it. It was still good for me, and it was still healthy for my body. But I had not made it my own. Now that I have taken my practice to the place where it is a time of peace for me, a time to grow, time to reflect, even a time to play (as you will see in some pictures) it has made an amazing change in my life. I am sleeping better, I have an appetite again, my anxiety is more under control. It almost feels like I've made a new friens. I can't wait to get to my mat and have my time with her.
As parents we put our child before absolutely everything. But when we put our child completely before every need that we have there comes a time when your body and mind will collapse. We have to honor ourselves. I want to be me. I want Ocean to grow up with the person that I have worked hard to be, and I will lose that if I continue to cast myself. So I have chosen to honor me. Most of the time my yoga session is on my own, some me time. But I have also wanted to expose Ocean more to yoga so that it can be a part of his life. We have been having fun with some creative poses.
Picking out paint yesterday for our TV interviews!
Never lose hope, my dear heart, miracles dwell in the invisible. – Rumi
Ahhh Rumi - you always speak to my heart.
Diabetes is an invisible disease but Ocean is not invisible. Over the last two days I sent out the small essay to diabetes charities, newspapers and TV stations. And they have proven that Ocean is not invisible because they have responded. We didn't need their proof, but we are excited to share Ocean's story and bring hope to other type one families.
Nonverbal T1D Toddler Paints his way to Alert Dog
Our two year old, Ocean Scott, was diagnosed with Type 1 Diabetes a month before his third birthday. Due to a protracted period of detection, and severe DKA, not only did he end up with a temporary femoral line to save his life, but his speech suffered a severe regression - or in other words, he could no longer talk.
As a parent we fear that the challenges he will face from t1d and its complications may overshadow his journey in life.
However, Ocean has already learned to express himself; through his art. As he has had zero instruction, what he paints truly is his soul - literally making the unconscious, conscious - and by doing so, quietly illuminating the beauty that largely goes unrecognized in our own.
He has already shown us that no matter what our struggles in life, we all have our gifts and it is time we stop criticizing each other for our differences and celebrating the gifts we each have. Its time for us to live.
His art and my blog at oceansart.org are dedicated to helping others in their search for joy while living with chronic disease. You will even find videos of Ocean painting. Half of the proceeds from Oceans art will be given to diabetes research and the other half will be saved to purchase a Diabetic Alert Dog.
Our lives have been forever changed by diabetes and at times it is hard to see the light but Ocean’s art shines so bright that it reminds us to hope.
Ocean my son. How we have grieved for your suffering and loss of joy with the onset of your diabetes. I have tried to help in anyway that I can, through comforting you, admonishing providers I thought to be careless, cruel or ill fit; smiling to soothe you and praying for you. However, my efforts have been a complete failure and it is agonizing to watch you kick, scream and cry - rightfully for what has been inflicted upon you. I have never seen someone poked with needles so many times, or screamed until they passed out and I wish I never had. Like all parents who are actually normal, I would trade places with you to spare you - though the suffering most likely would have killed me. I watched your bones be drilled for direct IVs to get you fluids, and I assure you were a friend, ever a close friend of deaths and sat upon her knee, tottering between the doors of worlds. The cruelty of many humans is only surpassed by their stupidity and ultimately, maybe briefly understood when they are in the position I am, and watched helplessly as an uncaring attendant vandalizes and rapes the joy from their loved ones – inflicted much pain, of course claiming it to be necessary and in the name of health.
You now rest safely with your mother. It is 2 AM, and we have been in the hospital cresting our third day. How can you, my son ever know joy again? How can I am unhear your screams? The drilling upon your bones, eradicate the anguish, anger, powerlessness and despair. These have been transformed into shame. Soon, if we are lucky we will take you far from this place and put you back into your home, with your toys, your dog, your cat and the other staples of your life. How I feel I have failed you! To watch you suffer in the name of what? Now you must suffer forever, as we have to administer shots and blood test multiple times a day – to an infant who can barely speak? How can you not hate me, the author of your physical being, for cursing you with the vampirish disorder that will never leave you? Even now, and again I shake as I write with the echoes of your cries, hearing more from the other children in the hall – feeling they are you and that I have to standby and watch them scream to no end. Many have no parents to comfort them – May I always try to give comfort to you, my only son and joy! I am so sorry and love you more than life itself,
~Scott Sandvig 3.23.16~